I am new to this site but have found some great information. (especially from Sue :)). I have all the typical symptoms of Augmentation from Ropinirol and am on the maximum dose 4mg (1.5mg at 2pm to try to decrease early onset symptoms and 2.5mg at 7pm)
GP just doesn't have enough knowledge and I would like to find a Consultant to help me wean off of Ropinirole and go onto a different form of medication. My iron levels are low at 4.9 umol/L and GP has place me on iron tablets but ideally I would like a tranfusion
Are there any Consultant recommendations for RLS in the Hertfordshire, Cambridge, Essex or London Areas (London is a pain due to Public Transport but will go there if there if I can be helped} I am fighting this battle of RLS which is ruining my life!
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LondonGir
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With serum iron of 4.9 you need an iron infusion. A specialist will arrange. What's your serum ferritin? That is the key number for RLS.There are very few knowledgeable specialists.
In London there is Professor Guy Leschziner at Guy's Sleep Clinic and Professor Walker at UCL Queen Sq.
However, we do always stress that even 'good' neurologists are still prescribing the Neupro patch in the mistaken belief it doesn't cause augmentation. It does.
There is a withdrawal schedule and an iron therapy page on RLS-UK website under 'useful resources'.
You could start the withdrawal process now. Switch to normal release Ropinirole in a mixture of 2mg, 1mg and 4 x 0.25mg pills and Reduce by 0.25mg every 2 weeks.
Ask your GP for a low dose opioid to settle the severe Withdrawals at each dose reduction. Take the opioid at night for 3 or 4 nights. If GP refuses you can buy solpadeine Max from chemist. They contain a small dose of codeine.
The GP should be able to deal with this, but probably has had no teaching on the subject.
The specialist will probably prescribe gabapentin or pregabalin but you start those around 4 weeks before you drop the last 0.25mg Ropinirole.
I cannot believe that I have am learning and understating more in the last 24 hours than in the last 15 years,. Thank you all so very much. I took 1.5 mg of Ropinirole at 2pm yesterday to alleviate day time twitches that seemed to work, although made me very tired by 6pm and then took 2mg at 7pm and twitching, and walking around the house like a mad women, was reduced
I have tried to reduce ropinirole (6months ago when I was only on 2mg a day) but symptoms during the day become unbearable and GP answer was to increase dosage but today I have received a private GP referral and will see if my Helath Care provider will allow me to see the consultants you mention above - *THANK YOU SO MUCH**
UK doctors aren't taught anything so are completely in the dark about augmentation and how it works. Or how to get you off the poison.
Many of us are completely RLS free - day or night- on different meds.
Many do well on pregabalin or gabapentin. Many find they just dont work after years on DAs. For those, opioids are needed.
But getting them in the UK is a minefield depending on where you live.
But start the process now. Go slowly.
The few private consultants cost between 250 - £350 for the initial consultation. They will then write to your GP to suggest either gabapentinoids or opioids.
Due to long waiting lists you will have to pay for private a private consultation.
Prof Matthew Walker, Neurological Sleep Disorders Queens Square in London or Dr. Guy Leschziner at Sleep Disorders team, Guy's Hospital in London or Dr Novraj Dhanjal National Hospital for Neurology and Neurosurgery in London.
Dr. Andrew Klein at the Nuffield Health, Cambridge Hospital - runs the Cambridge Iron Clinic- does private iron infusions for RLS for around £800. Dr Mathew Walker will also prescribe an iron infusion
Welcome to the forum. You will find lots of help, support and understanding here.
Have you seen my detailed answer on how to reduce the ropinirole and start gabapentin or pregabalin? If not, glad to give it to you here.
Same with my list of things that help or hurt.
Your ferritin is unbelievably low - in fact the lowest I have seen. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Obviously you need an iron infusion. Until you get one you can start taking iron.
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
I am not finding my GP terrible helpful and have a non urgent appointment for 3rd December to discuss RLS again. I had a private blood test which showed iron of 4.9umol and went to pharmacy for iron tablets which are Ferrous Sulphate 200mg - I have taken two in the last four days. I have learnt more from your blogs than from my own research of from my Doctor who has very little information other than to advise to increase dosage
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